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What It's Like to Have Cancer in a Global Pandemic

Zoos are sad places. After visiting a large zoo in San Antonio, Tx I vowed never to go back. I would never support treating animals so inhumanely. A lion meant to roam hundreds of acres of prideland confined to a couple hundred feet enclosure, will never be “humane” in my eyes. Sit in the lion’s den for a moment. Imagine watching stranger after stranger parade by your fish tank of a home, and gawk at you. Sometimes point and laugh, sometimes cower in fear, no one really caring what happens with your life. You have the necessities, but nothing more, let alone fun. Even the lions bred in captivity (which isn’t better), pace their cages. They aren’t meant to be there. Having a compromised immune system in the middle of a pandemic transforms you from a lion to a housecat.

"Autoimmune diseasincreases vulnerability to depression and other mental health challenges in general for biological, psychological, and social reasons."

I know I shouldn’t have waited to write this until after being in isolation a year. (Happy anniversary, Covid), but I kept someone else would be vulnerable so I didn’t have to. Let's be honest, does any of us like putting our shit out there for everyone to see? No. We do it though, because it can help someone. It can show that you aren’t alone in what you’re going through, and hopefully educate people that don’t understand in a relatable way. Ending the stigma of mental health is no easy feat but it’s possible if we talk about the things that are hard to talk about. For my anxiety disclaimer; If you’re new here, that’s my pet name for when I overthink. Naming it and putting it out there gives me the power over the anxiety.

Please don’t judge me. I am putting myself out there in a way that is scary and uncomfortable. Historically, when people talk about mental health, they get attacked. Please help fight the stigma by being gentle while disagreeing instead. It’s ok to have different opinions or experiences, I would love to hear yours, especially if it’s different from mine.

Sometimes, when something is particularly terrifying for me (like opening up about my health), I need a little extra motivation. Today, I searched “Immunocompromised in Covid”. I got a lot of really good health information that popped up (probably partly due to the fact that I spend time on and a lot as well as various medical sites. What I didn’t find was how people are dealing with it. Outside of the health issues of social distancing, how are people holding up? I have to admit, it did help ease a little bit of the discomfort I was feeling. No one knew what it was like, because you can’t know what you don’t know. Thus, prompting this post as the need is greater than my fear of judgement with this post.

Missing All the things

Yep, Happy Anniversary Covid. As a present I got to miss a whole year’s worth of birthdays, and we are about to go into round 2, but now I’ve missed all those people’s birthdays once (at least once, remember I’m an introvert). As if making and maintaining friends in your 30’s wasn’t hard enough, now I have to say no whenever I’m invited somewhere. What’s worse, is my whole family has to as well, in order to keep me safe. Imagine telling two teens they can’t go hang out with their friends, for a year, with no end in sight. Imagine telling them no every time they are invited somewhere. Oofta. I feel tired just thinking about it.

Without in-person interaction, friendships feel fake. I’m an INFJ, which means I am an introvert who really likes deep connection, is allergic to fake people, and gets physically exhausted from all of it, even if it can be defined as “fulfilling”. Digital conversations allow for so many blind spots, so I prefer seeing my friends. Before Covid, I would have one or two people over for dinner once a week. Conversation, sometimes games, sometimes crafts, and a couple hours they would go home. It was perfect for me, because I could build those relationships without having to tap myself out emotionally. Occasionally I would host game nights, with the rare night out on the town. I can’t imagine this switch for extroverts like McDeath, but for an introvert, it was excruciating for me too. I went from already feeling socially inept, but trying my damndest, to having all the comfortable forms of communication ripped from my choices.

I am not a phone person. There have been a few people in my life that I’ve had to train to text me over calling because they would call with “textable” conversations. While I think it’s easier to connect over the phone than text, it’s emotionally exhausting. Not to mention, although I turned 30 this year, I still don’t know how to end a phone call without being awkward. So, that might have a part to play in it as well.

Dealing with people who just don’t understand

Below are some “solutions” that have actually been given to me. Me personally. Comment if you have heard anything not listed here. I’m interested to hear what you’ve experienced.

“Sure, you have to social distance like the rest of us, right?”

Um, well yeah, except none of ya’ll are actually social distancing or wearing masks, but there’s always that person that “doesn’t like it.” So going out is still dangerous.

“Just don’t go out, and you’ll be fine.”

Thanks for that. I didn’t need to get groceries, (where I heard this the first time) or go outside at all (also heard it on a river away from people when I asked them to move out of my exit spot). I definitely should just enter my house, lock the door and never come out. My life will be great. “You’re not going to die, it’s like the flu.”

Actually, that’s the exact fear. Dying. In the beginning of this, everyone said “Don’t worry, it only kills old and sick people.” Like I wasn’t one of those sick people. Now that younger, healthier people are dying I keep hearing “It’s like the flu.” Except the last time the flu shut down our country

“You’re the only one that’s worried. You’re paranoid.”

“Can’t you just do it this one time? What could one time hurt?”

Can we talk about anti-maskers for a second? I come from a small town in Montana. We forage wild plants for our cough syrups, and know what plants will stop bleeding and prevent infection in the field (literally heh). While I wouldn’t say Montana is anti-vaccine as a whole, new vaccines are wildly rejected. As is pretty much anything that limits freedom. It’s a different mindset, one that I admittedly miss, being out in the open and not worrying about someone getting close enough to touch you in the grocery store. Social distancing in lines was one of the culture shocks I experienced moving out of Montana. None of my distant family will get the vaccine, and that’s ok, but it also means I can’t be anywhere around them until this has all passed. That being said, none of them want to wear masks, either. Let me start off with saying, masks suck dick. They are itchy, they’re hot in the summer, you break out more, and it’s hard not to touch them. Nobody is excited about masks. I hate them as much as the next guy. I am just as uncomfortable, and having asthma, I can attest it doesn’t really make a difference in my breathing. My anxiety definitely peaks when I feel like I can’t breathe, but if I can calm myself out of it, I know it’s in my head, therefore controllable (for me).

I won’t go into the science argument about why masks are important, that would make this post unnecessarily long, and I hope if you’re reading this you’re open minded enough to have done your research with reputable companies.

Play along with me for a moment. Think about the person you love the most. Think about what they look like when they’re happiest. Remember the lines around their eyes, and how they hold their mouths. If you don’t have anyone that comes to mind, think about future you, and all the things you want to accomplish, how you will feel when you get there. What it will be like to experience those dreams and goals come to fruition. Feel the hard work pay off. Now imagine that person is in peril. There’s a curse laid upon you that will kill anyone you love if you don’t keep your pickles in the pantry instead of the fridge. Only monsters would do that. Pickles are disgusting warm. Imagine never eating a cold pickle again. Say you hate pickles. Now it’s a cookie. Its a fudgy cookie that melts in your mouth when it’s warm...but you have to keep it in the fridge and you never get to eat a warm cookie again.

Is the sacrifice worth it? Would you eat warm pickles or cold cookies to ensure the person you love the most got to live and endure to see better days?

I have been in self-isolation for over a year, now. Last summer, there weren’t many things to do. We got a lot of yard work done, but we didn’t go anywhere. The highlight of the summer was the three times we went floating on the river. We were careful, we picked a spot where no one else would want to get out, and we got in where no one else was around ensuring we would be able to safely social distance. We didn’t bring masks. Can you even wear a wet mask? Water boarding is a thing for a reason. The last float of the year, a man was sitting on the rock we had chosen that trip to get out on. We kindly asked him to step up ahead for a minute so we could get out of the water, and out of his way. His response? He suggested I haul my kayak either up the cliff that I wouldn’t have been able to handle without anything in my hands, or over the rock he was standing on and up the hill. The rock was maybe 3 feet in diameter. There was no way I could have accomplished that task without pushing him in even when Covid wasn’t a concern. I kindly asked him to go up ahead again because I couldn’t social distance with him there. “There’s no social distancing in the woods.” Like the fact that we were in the middle of nowhere was going to protect me from catching a potentially fatal virus from this unmasked stranger.

That’s not the only thing that threatens your health in Covid, though. I remember the relief and anxiety I got when my oncologist called to tell me we were pausing treatments. Treatment days were not fun at all. It was like the worst flu I had ever had for 3 days straight. It was relieving to not have to plan around those horrible 3 days every month, especially with how drastically my life changed once self-isolation started. Naturally, that increased my anxiety. It was heart-dropping to hear my cancer was back, it was even scarier to think there wasn’t anything I could do, even if I wanted to. It’s hard to stay positive when you aren’t sure if your cancer is trying to take your life. They say early detection is important for a reason.

Everyday health care is compromised

Even my day to day health is compromised. I was due for a dental checkup, a general physical, and a haircut right before self-isolation commenced. I am displeased to inform you that my hair now can tuck into the belt-band of my sweats. Because let’s be honest, I haven’t worn a real belt in a year. My hands feel like I just started my first CNA job with all the handwashing and hand sanitizer. We now have an industrial sanitizer pump installed in our home directly inside the door. Legit from a chemical company, it was all we could find in March of 2020, and now we have enough sanitizer to last us until we die...which could be sooner rather than later if people continue to refuse to wear masks.

You wouldn’t think a pandemic had the power to remove your choice to disclose about your health. I mean, yes. I’m writing this blog post, therefore it is my choice to disclose, but it has taken over a year to do it right? We talk about things when we are ready, and in Covid, I don’t have that choice. People don’t take me seriously if they don’t understand I’m legitimately fearful for my life.

You hear about the mother that lifts a car off their child, and it makes sense. Adrenaline when she’s fearful the life she created would be snuffed from this world. Maybe I have had too much binge-watching but the epidemic shows like “Containment” do not have me comfortable with someone within 2’ of me breathing from their nose which has a mask perched conveniently below it allowing all their tainted breath droplets out to expose the world. The way our brains work, I get a shot of adrenaline the same way that mother gets when she moves that car. Except my adrenaline has nowhere to go. I have to act like everything is fine. You know, I’ve been told I have cancer 4 times now (I count the very first “pre-cancerous cell biopsy” when I was 17 because that shit was scary too!). In all of it, I have never really worried about my life. It’s been something that was just part of it. No one really knew. Cancer is common in my family, so it’s not like it would be a news that would be out of the norm to hear. It didn’t seem important to share. I’ve never enjoyed those people that post a selfie with a warm filter and an inspirational quote with a long-ass story about how their cancer made their life better. While I’m happy for those people that they can live life so joyously, I am, and never have been there. I do not celebrate my cancer. I am not a better person because of it.

Before Covid, none of that mattered. I didn’t even really talk about my feelings toward cancer with anyone, because it was just a part of life. You don’t really talk about your need for caloric intake either right? Countless screenings, appointments, tests, waiting periods, and treatments, and never once did I think that this might mean I could die. That I might not be here to watch my kids grow up. In my mind, I was always stronger than the disease. There was more of me, and it needed me to survive.. Even when I couldn’t get it to fucking go away. Even after I was told it was back again 6 months before lockdown. I had started to tell people, but I still felt like I was going to win. In one phone call, I went from walking into 5 - 10 businesses a day, to not leaving my driveway. Not one lifestyle change I had made before this could amount to that level of change. No number of labels read, kale smoothies, pills, treatments, or days sick in bed could amount to not having the freedom to tell a joke, or surprise a random cashier by being a nice customer when something goes wrong. I used to say “It makes my day to make people’s days”, now I am lucky to get through a phone tree to talk to real life human-being.

At first it was nice working from home. I liked not driving all over the place to meet with people. I still did my best to make people’s days by having actual conversations and remembering things about them like the kittens they had that were about to go to new homes, and a motorcycle accident that didn’t warrant a day off, but months later the chiropractor was still working on pain relief. There’s a reason I don’t work in tele-anything. That reason is simply that telemarketers don’t make enough money. Which is also why my company would rather pay them, rather than someone like me, who’s magic comes from face to face interactions, because I appreciate the empathy in consulting. I became one of the many who lost their jobs because of Covid. Luckily, I wasn’t one of the many who relied on unemployment, and saw it as an opportunity to pour my soul into Villain Esteem, which was never meant to be a side gig anyhow. Knee deep, I’m not sure I ever could have pulled this off with a full-time job.

I say “lucky” because imagine my life if I wasn’t as blessed as I am? Imagine if I had gotten that call from my doctor telling me not to leave my house, AND I had to start interviewing for a new job, AND my food bill went up because I had to order online and can’t bargain shop anymore, AND I have to pivot change my career choice because I was enrolled to start nursing school in the fall of 2020, which was taken off the table of career choices for me forever.

In all of the ways Covid has affected me, including introducing me to the deep understanding of morality, none of it stands a shot in the wind against the cosmic guilt I feel for putting all these changes into the lives of the people close to me. The fear I feel for myself, is new, but understandable. Experiencing this fear for my partner’s life, or my child’s life, seems unbearable. It’s probably one of those “normal”, “you’re not alone” moments of wanting to run away rather than hurt the people I love the most, and it’s probably even more normal to experience the shame of changing the lives of everyone I love most. It is a hard hitting fact that my physical illness has a direct negative impact on my partner’s mental illness (depression), because she can’t go to the gym while I’m at risk. Covid had a larger impact on the world than just the physical risks, most people who aren’t at risk will never understand. They might never know the ripple effects the fear of potentially losing their life has, and I hope they never do.

Kwan A, Katz P, Touma Z. The assessment of anxiety and depression and its associated factors in SLE. Curr Rheumatol Rev 2019;15:90–8.

Barlow JH, Macey SJ, Struthers GR. Gender, depression, and ankylosing spondylitis. Arthritis Care Res 1993;6:45–51.

Mccormick N, Trupin L, Yelin EH, Katz PP. Socioeconomic predictors of incident depression in systemic lupus erythematosus. Arthritis Care Res (Hoboken) 2018;70:104–13.

Vallerand IA, Patten SB, Barnabe C. Depression and the risk of rheumatoid arthritis. Curr Opin Rheumatol 2019;31:279–84.

Pryce CR, Fontana A. Depression in autoimmune diseases. Curr Top Behav Neurosci 2017;31:139–54.

Wang C, Pan R, Wan X, Tan Y, Xu L, Ho CS, et al. Immediate psychological responses and associated factors during the initial stage of the 2019 coronavirus disease (COVID‐19) epidemic among the general population in China. Int J Environ Res Public Health 2020;17:1729.

Jeppesen R, Benros ME. Autoimmune diseases and psychotic disorders. Front Psychiatry 2019;10:131.

Eldeiry D, Zandy M, Tayer‐Shifman OE, Kwan A, Marzouk S, Su J, et al. Association between depression and anxiety with skin and musculoskeletal clinical phenotypes in systemic lupus erythematosus. Rheumatology (Oxford)2020;59:3211–20.

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1 Comment

Very informative, great post!

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